Sometimes the only people who understand are others who are living with lupus. Your story may really help someone else.
Tell us about:
1 fact about your life with lupus or your lupus journey
1 of your favorite activities
1 person or pet important in your life!
Take a moment to introduce yourself to the community here in this forum!
Hi! My name is Ava and I live in Charlotte, NC with my husband, two sons, and pet birds. I've been living with lupus for at least five years and it has brought me so many great friends! Pretty much the only good friends in my life right now have come from lupus support groups or similar activities and I'm so grateful to have them, even if it is a byproduct of my illness.
One of my favorite activities is reading! I don't get to do it very much with two young boys, but there's just nothing like being able to escape into another world with a book.
I have an amazing pet bird named Koopa! She is eight years and old and brightens my day so much - literally, as she's quite yellow. I even wrote a post about her: https://lupus.net/living/pets-comfort
Looking forward to reading about others in the community! -Ava, lupus.net team
Hi, my name is Gabrielle Davis and I was diagnosed with lupus in 2009 and lupus nephritis in 2010/2011. I am now on dialysis, which is bittersweet because it helps me live, but it is a demanding form of treatment that has changed the flow of my daily life. I absolutely love live music festivals -- good music, food and vendors and I'm a happy woman. This is going to sound narcissist but the most important person has to be me right now -- or else I won't be around for those I love. Gently working on self-love big time. Nice to connect.
Thanks Gabrielle 😀 😀 - Liz (Team Member)
Hi all. My name is Beth, I've been dealing with various auto-immune diagnoses, most recently Psoriatic Arthritis. No rheumy had ever checked for lupus. I started with a new doctor and she ran the tests and found it. I also have been diagnosed with fibro, CFIDS, PCOS, and multiple issues in my lower back.
I am also the 2nd layer of a 5 generation sandwich, and everyone from my mother to my 2 great grandchildren live in the same small town. I make chain maille jewelry, work with fused glass, spin yarn, and read.
Hi! My name is Marie. I live in Utah but grew up in Texas. I'm one of seven children, four of whom are twins, including myself. No one else in my family has yet been diagnosed with lupus, including my identical twin sister.
I began the journey to diagnosis about four years ago when a doctor thought I had lupus but didn't pursue it. I finally found a really lovely rheumatologist here (message me if anyone here is from Utah and needs a rheumatologist recommendation!) who completed the testing and confirmed a diagnosis of SLE.
One of my favorite activities to do is community organizing and mutual aid work. It is invigorating to immerse myself in community care and preparation, doing preventative and restorative work to build structures that can sustain our community through and past my time. I also have an art studio that I make nonsense in, and I read a few books a week. I miss the sun so much since being diagnosed with lupus. Previously, I've really loved being out in the hot sun enjoying parks and mountains and farmer's markets and the likes.
I just had to put down my sweet Siamese cat, Pablo, after 16 years of hanging out together. It was nice to be able to assist him through his pain onto the next journey. My partner is my favorite person. He loves me in a way that I haven't experienced before and that love gives me grounding and confidence to pursue proactive care for my health. I wish everyone a sweetness in their lives like he gives me. He's funny, has eccentric and complimentary interests, and he's steady in his life and in his care for me.